The Big Day

Thursday is surgery day for Ethan.  I can't believe it's almost here.  Doctors have been mentioning surgery to us since Ethan was 6 months old.  Every doctor's appointment we would always wonder "Is this when they are going to say he needs surgery?"  It's hard to believe that day is finally arrived.

We are leaving tomorrow night and heading to Cedar Rapids to stay with Adam's aunt and uncle, Barb and Al.  Our Grammy and Nana are coming along as support crew for us as well.  Ethan has to be checked in at Iowa City at 6:15 am and surgery will start about 7:15.  I believe they had previously told us it would take about 1 hour per eye.  We will go back to Cedar Rapids after we are discharged on Thursday and then have a post op appointment on Friday morning.

On Sunday night when we were putting the boys to bed, I told them they had 3 school days and then it was Ethan's surgery day.  Ethan gave a very excited "Woo Hoo!!"  I'm so glad he'd not scared...yet.  He's always been such a brave little boy at all of his appointments and so willing to cooperate with any testing they've wanted to do.  I hope he proves to be the same on Thursday.  He can recite all of his "rules" for after surgery (no rubbing his eyes, no water in his eyes, no dirt in his eyes, but he must get drops and cream in his eyes).  He also keeps telling everyone at school that his eyes are "sick" so he needs surgery and they will miss him while he is gone.  The teachers are a little nervous about what things will be like that first week back, but they do such a great job at ACPC that I know there will be no problems.

I'm so used to looking at Ethan with his crossed little eyes.  It really is a part of who he is.  I'm a little sad to be straightening them out, but know that it really is the very best thing for him. 

Here's some "before" pics for you.  We'll be sure to put some updates on here over the weekend along with some "after" pics. 

1 year

18 month

2 yr-first day with glasses

3 year

Little brother cheering him on!

The Fairs

What a busy weekend we had!  Auntie B and Auntie Mimi flew in from Denver on Thursday evening.  The boys had a picnic with them and Grammy at Riemen Gardens in Ames on Friday.  The night, we took off for Marcus to attend the 75th Marcus Fair.  There are several things I love about that little fair.  The admission is FREE....you can't say that about much anymore.  Basically, the only thing you pay for is your food and ride tickets.  All the entertainment, from the tractor pull to the hypnotist to the horse show to the parade is FREE!  It was also wonderful to know that I could give my kids (and myself) a little roaming room.  Seriously, everyone knows everyone.  If someone tried to steal my kid, someone else would say "Hey, that kid doesn't belong to you."  The boys were so excited that they could actually run ahead of me without me yelling for them to hold my hand or stay close.  We took in some animals and of course, Grammy sprung for lots of ride tickets.  Great Auntie Mary let the boys have their first "camping" experience by letting us sleep in her camper in her backyard.  They loved it!

They would always give a "thumbs up" to the operator when they were ready to go.

 

On Sunday we went out to Uncle Cody and Aunt Jen's house on the farm.  We had a birthday party for the 4 kiddos.  Emma and Jonathan's birthdays are in August and the boys' are in October.  Unfortunately, no one is going to be able to make it to the other ones birthday parties and the aunts weren't sure if they could come back again this year.  So, we had a celebration.  There was grilling, presents, cake, and cousins playing.  Uncle Cody topped it off by taking the boys out in the tractor to rake hay. 

After 3 fun filled days, the Marcus Fair came to an end for another year.  The boys were so tired, they could hardly put one foot in front of the other, but they would never admit their exhaustion.  They slept for 13 hours straight!!  Monday morning, we popped up bright and early and all headed out to the Iowa State Fair.  The boys received strict instruction that they would need to ride in strollers because this was a GIANT fair.  I think they may still have been a little exhausted from the weekend and liked being pushed because there wasn't much fuss about stroller riding :)  They each lined an arm with tattoos from the Varied Industries Building, ate lots of good food, did Little Hands on the Farm, saw animals, rode the sky glide, sat on tractors, and ate some more (gotta have the warm chocolate chip cookies!). 

 

After all of that, we took the aunties to the airport and said our goodbyes.  You would think we would be "faired" out after all of the that, but when we put them to bed, they asked if we could go to the fair again tomorrow.  They were pretty disappointed when I told them it was a school day and we would have to wait a whole year before it was fair time again.  We have had such a fun summer and can hardly believe it's coming to an end.  We are hoping for a few more pool days in the next couple of weeks.  It's starting to get dark earlier at night and the evenings are beginning to feel cool.  Sure signs that fall is on its way.  In 2 short weeks, we'll be in IA City for the much anticipated surgery and then we'll know for sure, that summer is over. 

Update: Ethan's Eyes

While on vacation last week, Ethan and his last visit to IA City before surgery.  Surgery is scheduled for September 1.  The first thing they did was checked Ethan's prisms.  They said they still feel like they have the correct prism strength, but Ethan's doesn't really like to use them, but rather looks over the top of his glasses.  They initially decided to leave the prisms off until surgery, but he noticed immediately that they weren't on there.  So, they put the prisms back on and showed me how to take them on and off.  They said I could use my discretion as to if he wears them or not.  Currently, we have them off.
 
Let's move on to an anatomy picture....

There are 6 muscles that control the movement of your eyes.  6!  Can you believe that?  The more I learn about Ethan's eye problems and how your eyes are suppose to work, I realize how complex our eyeballs really are.  Even more, how much we all take our vision for granted.  It's a wonder any of us are born with "normal" eyes.

Dr. Drack said that she is planning on working on 2 muscles in Ehtan's eye.  The medial rectus, which is located on the inner side of the eye.  This is the muscle responsible for his eye crossing.  She said kids that have this muscle operated on typically have pain for about 2-3 days.  She is also operating on the inferior oblique muscle, which attaches to the bottom part of the eye and wraps around to the outer edge of the eye.  This muscle helps you move your eyes up and to the left or right.  Ethan's right eye is much worse than the left.  When he looks up and to the left, his right eye completely disappears.  Ethan likes to call this his "trick" and show it off to people (see the video above).  He will often say it's because his eyes are "weird" or "special".  Dr. Drack said his eyes will always be special, but that we'll have to come up with a new trick for him, because she is going to fix this. :)  She said operating on this muscle usually causes discomfort for about a week after surgery.  She also explained that the eye is not covered by skin like the rest of our body.  When we have an operation on another part of our body, we see the "trauma" appear as bruising through the skin.  The eyes will "bruise" also.  They will go through various colors of red and purple for up to 6 weeks after surgery.  Most likely he will also end up with 2 black eyes. 

The Rules.  She said that there were 4 rules we must follow after surgery.
1.  Use antibiotic/steroid eye drops and eye ointment four times a day for 1 week after surgery.
2.  Do not get any dirt into the eyes for 2 weeks after surgery.
3. Do not get any water into the eyes for 2 weeks after surgery.  No more bathing with Aidan for a little while!
4. Do not let Ethan rub his eyes for 2 weeks after surgery.  Although she said this sounds like the most challenging of the rules, she said if you frequently remind him during the first 24 hours after surgery not to touch his eyes, most kids do a really good job.  But, since we can not be watching him 24/7 (like when he is sleeping) they will give us elbow restraints to put on him so we can't bend him elbow to be able to even reach his eye.  Gee, that sounds that great fun!

She said he would wear his current glasses immediately after surgery because she doesn't want to "rock the boat" too much. Eventually, she will begin gradually decreasing the prescription of his bifocal with the hope to get rid of it all together.  He will always have to wear glasses though.  She said that Ethan is a little bit hard to figure out because he doesn't follow the norm for kids with albinism, but he also cooperates so well with all of their testing, but she had a bit more information on him than she normally does a 3 year old.  Adam thinks we should get our operation for free since we have since a star patient :)

We've talked to Ethan just briefly about surgery.  I had him take a look at Dr. Drack before we left on Friday and told him to picture her all dressed up like Mommy does for work.  A hat, a mask, a gown.  I think we'll let him take this picture of Aidan along with him for support that day. 

For a 3 year old, September 1st is an awful long time away, so we'll keep talking about it periodically between now and then.  Our hope is that his eyes will be fully recovered from a successful surgery by his 4th birthday the beginning of October.  Until surgery day....

July

Our month has kept us busy so far.  4th of July weekend was spent with friends at the parade and a BBQ back at our house.  The kids a had a blast all playing together in the pool.  The older ones played so good together and the babes all took nice naps.  The adults actually got to have some conversation!

Filling up the pool for the first time this summer.

 

4th of July BBQ

 

Parker

Luke and Owen

 

Lily

Makayla

Adam's dad, Selwyn has amazing flower gardens.  He hosts a garden tour of his backyard every year.  July is prime bloom time for daylilies and they were beautiful!

This past week we have been on vacation with the Rash family.  We rented a house in the Galena Territory for 5 days.  It was beautiful.  We had a great, secluded area.  We saw many hot air balloons and even watched some fireworks from our deck one evening.  We played baseball, frisbee, football, golf.  We swam, we ate, we drank, we shopped.  Most of all, we spent time together.

View from our deck

Stephen grilling.

Cousins

Kayla

Connor

Ethan

Cheese!

 

Aidan

Baseball time!

 

The kids liked having "dance parties" together.  I couldn't get a video to upload here, so check out Facebook for videos of that.

We plan on finishing off the month by the boys getting to spend a weekend with Grammy while Adam and I head to Chicago to see Paul McCartney in concert at Wrigley Field with Steve and Steffani.  Where is summer going!?!?!?